Advisory Panel on Patient Engagement Spring 2014 Meeting: Day 2

Patient Engagement
Advisory Panel
April 29, 2014
Alexandria, VA
Patient Engagement Advisory Panel, April 29, 2014 1

Recap of Day 1,
Overview of Day 2
Sue Sheridan, MIM, MBA
Director of Patient Engagement
Charlotte W. Collins, JD
Co-Chair
Darius Tandon, PhD
Co-Chair

Agenda for April 29
3
9:00 – 9:30 a.m. Recap of Day 1, Overview of Day 2
9:30 – 10:30 a.m. Evaluation Subcommittee Report
10:30 -10:45 a.m. BREAK
10:45 – 11:15 a.m. Update on Matchmaking and Partner Lists
11:15 a.m. –
12:00 p.m.
Compensation Subcommittee Report
12:00 – 12:15 p.m. BOXED LUNCH
12:15 – 12:45 p.m.
Discussion on “Patient” Definition, Privacy Issues, and other
Questions
12:45 – 1:30 p.m. Update on PCORnet
1:30 – 1:45 p.m. Wrap-up and Conclusion
1:45 p.m. Meeting Adjourned

PCORI Evaluation Framework:
Comments from PEAP
Evaluation Subcommittee
Evaluation Subcommittee
Mark Boutin, JD
Steven Blum, MBA
Sara van Geertruyden, JD
Darius Tandon, PhD

Process for Generating Recommendations
Committee members reviewed draft PCORI
evaluation framework (February 14th version)
Conference call to generate initial impressions from
subcommittee members
In-person meeting to generate specific
recommendations for PCORI to consider

Overarching Recommendations
(a.k.a. our “Top 10 List”)
1. The evaluation plan should link to the PCORI brand of
“research done differently.”
2. The evaluation plan should provide information that is
useful for multiple key audiences, including those
making decisions about PCORI reauthorization.
 Need to have a 3-year framework in place
3. Metrics should be created that are relevant for a 3-
year evaluation framework.
4. The evaluation plan must be communicated in user-
friendly language to the array of key PCORI
stakeholders.
5. Stakeholder valuation of PCORI needs to be
incorporated into the evaluation plan.

Overarching Recommendations
6. More metrics need to be created to understand how
stakeholder engagement resulted in greater
stakeholder capacity to engage in research.
7. Additional qualitative measures examining the impact
of PCORI’s emphasis on patient and stakeholder
engagement should be developed.
8. Completion of surveys that measure attitudes toward
engagement should be a contract requirement.
9. More attention should be given to how PCORI’s work
influences others (e.g., funders).
10. More attention should be given to how PCORI
findings and products are used.

Program Timeline
8
Task Timeline
Welcome Inaugural Ambassadors – Patient
Engagement Advisory Panel
Saturday, September 21, 2013
Invite workshop attendees, advisory
panelist, merit reviewers, and PCORI
funded project partners to join the PCORI
Ambassador Program
September 24- October 1, 2013
Development and release of PCOR
Science Training
November 2013
Conduct six-month program evaluation Spring 2014
First annual meeting Spring 2014
Release of additional PCOR Science
Training
Summer 2014
Conduct one-year program evaluation Fall 2014
15-Minute Break
Refreshments in the upper lobby foyer.
Patient Engagement Advisory Panel, April 29, 2014

PCOR Partner List and
PCORI’s Matchmaking App
Challenge
Celeste A. Brown, MPH
Program Associate, Stakeholder Engagement
9Patient Engagement Advisory Panel, April 29, 2014

The PCOR Partner List

The PCOR Partner List
A service on PCORI’s website, open to patients and stakeholders
who want to partner on a PFA research team or on other PCORI
initiatives
PCORI’s initial approach to facilitate creation of partnerships,
because engagement is something we demand from project teams
Launch 1: March 4 – April 4
 112 responses
 Sent names to researchers from pragmatic trials, obesity, and transitions in
care - targeted PFAs
Launch 2: April 23 – May 15
 For the PCORI Matchmaking App Challenge
11
www.pcori.org/pcorpartnerlist

PCORI’s Matchmaking App
Challenge

Motivation for the 2014 Matchmaking App Challenge
Researchers often ask how to find patients interested in
collaborating.
Patients and stakeholders may have an idea but not the research
experience to bring it to fruition.
Matchmaking facilitates bi-directional initiation of research
partnerships.

Goals of the 2014 PCORI Matchmaking App Challenge
Increase the ability for all user types – patient, stakeholder,
researcher – to initiate a PCOR relationship.
Build a self-sustaining online community interested in patient-
centered outcomes research.
Spread the method of patient engagement in research across the
country.

PCORI Matchmaking App Challenge
Polished, ready-to-publish apps
Total Prizes: $150K
• 1st Place: $100K (60/40 payment schedule)
• 2nd Place: $35K
• 3rd Place: $15K
Must work with patients and/or stakeholders in
product design

Required Features
Facilitates creation of partnerships among all user types: researchers,
stakeholder, patient
Users must be able to self-select the user type(s) with which they primarily
identify
Internal (user-only) communication platform
Ability to translate from English, or have a plan to translate the app into other
languages
Section 508 compliance
Interoperability/ability to integrate with preexisting research networks (such
as, clinicialtrials.gov, and the PCORnet CDRNs and PPRNs)
A clear designation that participation in the application (web or mobile
version) is voluntary and, therefore, disclosing personal medical information
is the app user’s choice and responsibility

Suggested Features
Social media integration for external networking
Robust user profiles
Advanced search options (e.g. geocoding)
Customizable displays, which allows users to filter and display their network by
category (disease condition, geography, individual. Consider the features
LinkedIn uses to display existing relationships and suggested connections)
An admin dashboard, which allows users to pull data about the reach and
depth of their network
An analytics dashboard, or feature, that other funders and research institutions
could access to retrieve data and the existing network (displays such information
as, where users access the network from, user concentration by geography,
frequency of use, etc.)

Judging Criteria and Definitions
Creativity: uniqueness and innovation in approach to fulfilling the mandatory
requirements; the variety and value of additional features
User interface and user experience (UI/UX): overall look and feel of various
displays and ease of use of all features
Evidence of co-design: the inclusion of patients and stakeholders in the app
design and development process
Sensitivity: demonstrated cultural awareness; consideration of the variety of
potential users (PCORI’s priority populations)
Incentive: impetus users have to download the app and return to use it
frequently
Past performance: evidence of the volume and quality of the app developer’s
previous experience (judged only from the “Past Performance” slide in the .PDF
submission)

Timeline Overview
19
Challenge Development Period
 Challenge Launch Date March 17, 2014
 PCORI Webinar for Promotion March 20, 2014
 PCORI Webinar April 30, 2014
 Application Submission Deadline Aug. 15, 2014
Judging Period
 Virtual Judging Begins Aug.15, 2014
 Judging Completed Aug. 31, 2014
 Winner Announced Sept. 2014

Questions?
matchmaking@pcori.org
www.pcori.org/pcorpartnerlist
www.pcori.org/challenge

PCORI Principles of
Compensation Parity
Compensation Parity Subcommittee
Charlotte Collins, JD
Regina Greer-Smith, MPH, FACHE
Lorraine Johnson, JD, MBA

PCORI Patient Engagement Rubric
Time and contributions of patient partners are
valued and demonstrated in fair financial
compensation as well as reasonable and thoughtful
time commitment requests.

Issues That Matter
Who is compensated?
Who is providing the compensation?
For what level of activities?
How much?
Mandated or suggested?

Who Is Compensated
Patients
Caregivers
Patient Organizations
NOTE: Research subjects (study participants) are
not included in this topic.

Cover Reasonable Expenses
• Travel
• Accommodation
• Meals
• Childcare
• Internet/telephone
• Conference fees
• Training participation
• Prompt, and even advance, reimbursement

Level of Activities
I. Simply informing
II. Consulting on decision
III. Deciding together
IV. Acting together
V. Encouraging independent initiatives
Research
Subject
Fully Engaged
Partner

Compensation Alignment with Activities
Parity reflects -
commitment
dedicated time
skills
expertise
 level of patient engagement expertise
commensurate with contributions by other
collaborators

Other Considerations
Align with level of activities
Flexible – consider choice
Non-cash incentives
Opt-Out
Consult with the patient/caregiver/organization
 Public benefits eligibility risk
 Organization’s internal policies
Formal contract
Mandatory vs. permissive

Program Timeline
29
Task Timeline
Welcome Inaugural Ambassadors – Patient
Engagement Advisory Panel
Saturday, September 21, 2013
Invite workshop attendees, advisory
panelist, merit reviewers, and PCORI
funded project partners to join the PCORI
Ambassador Program
September 24- October 1, 2013
Development and release of PCOR
Science Training
November 2013
Conduct six-month program evaluation Spring 2014
First annual meeting Spring 2014
Release of additional PCOR Science
Training
Summer 2014
Conduct one-year program evaluation Fall 2014
Boxed Lunch Break
Boxed Lunch is served in the
Upper lobby foyer.
We reconvene at 12:15 pm.

Discussion on “Patient” Definition,
Privacy Issues, and other Questions
Compensation Parity Subcommittee
Charlotte Collins, JD
Regina Greer-Smith, MPH, FACHE
Lorraine Johnson, JD, MBA

PCORnet Update
Jaye Bea Smalley
National Urban Fellow and Special
Assistant to the Chief Engagement
and Dissemination Officer
31
Sarah Daugherty, PhD, MPH
Senior Program Officer, CER
Methods and Infrastructure
April 29, 2014

PCORnet Update
Revised Infrastructure Rubric
PCORI Patient Engagement Webinars
Strategic Portfolio Management
The ENACT Tool
Common Data Model Version 1.0
Update on Patient Engagement Activities
32

PCORI Network-Led Patient Engagement
Webinars
Building on recent feedback to create a continued dialogue and a
sharing of promising practices, the goals for the engagement
webinar series are to:
Promote PCOR readiness
Encourage the development and sharing of promising
practices among PCORnet
Foster collaboration among networks
Identify existing resources
Identify issues and challenges in patient-engaged network
development
33

PCORnet Patient Engagement Milestones
3.1 Description of patient roles and responsibilities in governance is developed and submitted to PCORI
3.2 Approaches for enhancing patient involvement in governance are developed and submitted to PCORI
3.3 Approved approaches for enhancing patient involvement in governance implemented
3.4 Report summarizing patient engagement activities is submitted to PCORI
3.7
Approaches for patients to ask and prioritize research questions are developed and submitted to
PCORI
3.8 Approved approach for patients to ask and prioritize research questions is implemented
3.9
Approaches for enabling patients to communicate with each other are developed and submitted to
PCORI
3.10 Approved approaches for enabling patients to communicate with each other are implemented
3.11
Approaches for enabling patients to receive research finding results are developed and submitted to
PCORI
3.12 Approved approaches for enabling patients to receive research finding results are implemented
35

PCORnet Patient Engagement Milestones
4.11
Approaches for patients to securely extract their own data through EHRs and/or health claims data are
developed and submitted to PCORI
4.12
Approved approaches for patients to securely extract their own data through EHRs and/or health
claims data are implemented
36

Strategic Portfolio Management
Monthly calls with awardee teams
Quarterly progress reports
Completion of ENACT tool is required as part of
progress report
Summative analysis at 6, 12, 18 months
Site visits
Monthly assessment of technical assistance
provided
37

Engaging Patients in Infrastructure
38
Engage
EvaluateEnhance

PCORnet ENACT Tool Protocol
Integrate end-users into developing assessment
tool, interpreting findings, and disseminating results
 Patient and Consumer Engagement Task Force
 Evaluation working group established
Timing: Baseline and 6-month assessments
Respondents: PI, lead patient representative,
clinical partners
Dissemination: aggregate results to network
partners
39

PCORnet Common Data Model Version 1.0
Demographics
 Date of birth
 Sex
 Race
 Hispanic
Enrollment data, including dates
Encounter data, including inpatient and
outpatient; visit type, provider type
Vital signs
 Weight
 Length (0 to 2-3 y)
 Height (2-3 + y)
 Blood pressure, position taken
Codes for diagnoses, procedures
40

Thank you!
Safe travels home!

Advisory Panel on Patient Engagement Spring 2014 Meeting: Day 2

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Advisory Panel on Patient Engagement Spring 2014 Meeting: Day 2